This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

Hi Everyone, I am the mother of two children with kidney disease. In Feb 2003, son Robin (14) ballooned overnight to be unrecognisable, FSGS was later diagnosed by biopsy. This was particularly upsetting since it came only months after we had all tested clear for kidney disease after daughter Abby (12) had been diagnosed with IgA Nephropathy. Bristol is our Renal Unit.

We had already lived through more than 5 years of another serious family illness and frankly the last 12 months have seen me close to a breakdown. I would gladly take on all their pain and illness but feel helpless and find life so unfair for them. To see them at the start of their lives and know that their health can only get worse is a living nightmare with no possibility of awakening. I am in tears now but at least I am passed the breakdown danger thanks to a supporting family - who all rallied around to give a mass blood/ urine donation session to help in Duke Univ's research programme into familial FSGS (our family typically managed to turn it into a party and dressed as vampires!).

The help, support and knowledge found here have also helped me a great deal, and the knowledge that others are worse off than we are yet still cheerful and strong; Robin and Abby are relatively well and living normally at the moment, long may it continue.

hi all-- MY NAME IS REBECCA, I AM 26 I HAVE 4 KIDS , 2 ARE MY SONS 10, AND 11, AND TWO ARE MY STEPDAUGHTERS 8, AND 11. I FOUND OUT ABOUT MY KIDNEY DISEASE WHEN I WAS PREGNANT WITH MY OLDEST SON AT AGE 14(I WAS STUPID) AND I HAD A TRANSPLANT DECEMBER 9 OF 1997, I JUST W4ENT TO MY NEPH YESTERDAY BECAUSE MY CREATININE IS A 5.1 OR AROUND A 450 FOR THOSE IN THE UK. HE TOLD ME TO PREPARE FOR HEMO SOON. I AM VEEEEERRRRRRRRRRRYYYYYYYYY HAPPILY MARRIED AS OF 2001, MY HUSBAND DEVLIN IS LEGALLY BLIND DUE TO A ASSULT SO WHAT I CAN'T DO HE DOES AND WHAT HE CAN'T DO I DO. I LOVE TO GO TO CHURCH, READ, AND ALWAYS HAVE A HOUSE FULL OF KIDS. I WISH TO ADOPT SOMEDAY BUT, EVERYONE SAYS I'M TO SICK. I LOVE THAT I FOUND THIS SITE, AND I PROMISE TO GIVE RACHEL A RUN FOR HER MONEY IN THE CHATTERBOX DEPARTMENT.

Life is to short live everyday like there is no tomorrow----Dishes can wait!!!!!

I am a 34 yr old African/American female who has been diagnosed with type 2 diabetes since 1993, and ESRD since June 2001. I started out on HD in December 2001, but switched over to PD in May 2002.

The journey hasn't been easy, but all I can do is take it day by day. I try to keep busy to keep my mind off of things by tending to my dialysis board and chatroom, my homepage, doing research about kidney failure and my particular condition and seeing a chronic illness psychiatrist once a week.

I am an advocate of chronically ill patients doing research. I have been able to print out certain things, and present them to my doctors in order to communicate with them better. It also helps to be able to be in control of my treatment and outcome. I am also an advocate of patients being able to express their feelings openly and honestly and to not be made to feel like they are "ungrateful" if they complain about their situation. And above all, they should never be told how to feel either.

So that's my story. I'd like to take the opportunity to invite you all to come to my chatroom:

Rik has suggested I introduce myself too. My name is Rachael and I am the webmaster for the KPG. I've been visiting the board most days for the last five years but don't post very often.

The KPG site was launched in July 1999. I took over looking after it in November 1999 when I started at Cognitive Applications as a junior producer. In the first couple of years we added new content and were optimisitic about expanding the site.

Unfortunately since then we've found out that its hard to get funding for an existing project (if you don't want to take money from drugs companies or advertisers) and our attempts to raise the money to fund a dedicated children's site came to nothing. We keep the site going as part of our commmunity work and we're very proud of it. Even though its quite an old site (HTML 3 and no style sheets for those of you who are interested in these things!) we still get frequent requests to use the animations and one was even used in court in the US last year.

The biggest success of the KPG though has been the amazing community that has developed on this bulletin board. It has been both a pleasure and a privelege to be involved. I'm now the studio manager here at CogApp and work mainly on our government and social care projects. However, I have no intention of handing the KPG on to anyone else and will continue to read your posts everyday for the foreseeable future!

My name is Anne and I have had poleynephritus for as long as I can remember and have got along very happily on 50% kidney function. The last year things a now come down to 20% and this I was told only when I asked why they are getting worried, so came as something of a shock to find out that I was heading towards dialysis sooner rather than later from the sound of many of your letters.

Have found the whole idea very scary and difficult to come to terms with and am glad to have found somewhere to talk about this. As I now realise that life will change quite a lot. I also want to know how long of normal existance I have left so that I can cram as much into it as I can.

I know exactly how Anne feels. I have a similar story. My name is Simon and I lived with renal impairment since birth.
THe progression has accelerated and I am now joining the transplant list and attemping to face dialysis of one sort or another. Ican;'t decide which. I have been struggling at work and really need to go part-time, but I wonder how the powers-that-be will make of that? Anyone else had problems?

My husband Richard is 56 years old and was diagnosed with ESRD in 1996. He ended up going on Hemodialysis in 2001. We've been married 14 years and have 4 children and 8 grandchildren between us. We live in Livermore, CA, which is about 40 miles east of San Francisco.

Richard is a computer operator and was able to keep working until about a year ago. The company needed him full time or not at all, so he had to go on disability. He still helps people with their computers when they ask - and they do! That keeps him busy, plus he swims at the hospital health club. I work at the same computer company that Richard did and manage a computer help desk, plus I work part-time at our local mall information desk.

As with everyon;e, I guess, Richard has had lots of ups and downs with his kidney disease. He was in the hospital for a week in April due to pericarditis(Inflammation around his heart) due to not getting enough dialysis, so he was put up to 4 days a week - yuck!

We have had 2 friends that offered to be tested for Richard, but one showed up with high blood pressure, and the other with high blood sugar.
My son and I are both A+ and Richard is B+, so no go there. Richard's son Tony has been going through the testing process for a year now and we just found out yesterday that HE IS A MATCH AND GOOD TO GO! YIPPEE!

The people on this board are a great source of comfort to me. I feel like I know everyone well, even if I don't post as often as some!

Richard and I hope to be able to travel if this transplant goes well and I hope to actually meet some of you!

I am 34 years old and have just commenced CAPD. Creatinine level around 800 at the moment, but not feeling too bad - although fatigued alot. Have also just contracted an exit site infection which isn't pleasant and am off dialysis for a week to see if there's any improvement.
Work at Cheltenham Ladies' College - and no, it's not what everyone thinks it is! Contrary to popular belief - the girls don't all have famous or rich parents, and most of them are lovely. Work have been fabulous about my condition, giving me a private room in the medical centre to dialyse at lunchtimes, and being understanding when I need time off to go to hospital (which is all too frequent at the moment).
Suffering a bit with depression at the moment (I know a lot of you have said the same), and am hoping this will clear up in the near future.
Don't actually know anyone else with kidney failure, although have known of others by default (through friends, colleagues etc.)
My kidney failure was caused (they think) by taking a pill for period pains. I had an IVP when I was 22 and kidney failure was highlighted - although no one actually told me. This resulted in me carrying on with normal life, until I was 28 when I was taken in to hospital with Gynae problems. Upon providing a specimen, it was noted that I had proteinurea and I was referred to a Neph who did a renal biopsy and told me my kidneys were at 30%. This was 6 years ago, and I found out a couple of years ago they knew I had renal failure in 1992 but no one did anything about it - leaving my disease in the position of progressing from acute to chronic. This makes me very angry at times, but it will not change my inevitable transplant (hopefully this September - thanks mum!) I come from a family - luckily - with two sets of twins. I have a twin sister (non-identical), and my older brother and sister are twins (my Neph. said I had just about the best options of any of his patients!) I also have another sister - all who have compatible tissue type.
Oh well - onwards, upwards - and outwards (now I'm on CAPD!)

Hi I'm jenny living in West London. I'm Married (only just-last Friday!) with 2 children Beth and Tobey. My son Tobey (nearly 2) has chronic renal failure. He went into acute failure at about 3 wks old after (maybe) a urine infection and we ended up spending several weeks at Great Ormond St Hospital which was obviously very hard, especially as I have a 4 yr old daughter who didn't understand where we'd all gone.

After coming out he seemed to do really well and we hoped for min scarring but it was worse than expected (although it has stayed at the same level) and he has a GFR of 37-there's also a worry that his kidneys haven't grown in the last year. On top of this he has congenital scoliosis and is waiting on an MRI then surgery.

Day to day he's really good and happy, cheeky and mischevious like all 2 year olds we've spent the last year trying to understand whats going on and I think we've accepted now that we won't get definative answers and that we'll take each day as it comes and enjoy what we've got.

Hello everyone
This is Christine in DC and I have been very bad about posting. The past 4 months have been a whirlwind for reasons that will be obvious in this post.

I am 40, married to Robert 44. We live in the nation's capital patiently awaiting the day when the boy-chimp will be leaving (Ok, I revealed my political preferences). We've been married 6 years and have a 4 month old daughter we adopted in late February. Her name is Charlotte and she is the absolute light of our lives.

I have renal failure due to reduced kidney mass best anyone can figure. When I was 3 and 5 my right kidney and then 2/3 of my left were removed due to Wilm's tumor and a later recurrence. For 35 years I managed on the little bit but push finally came to shove and I got on the transplant list early '02. I made it until this Feb feeling pretty ok and then started PD. I'm on the cycler at night and just returned from 3 weeks in France where I dragged the damn thing, drain bags, cassettes etc. and have the fluid shipped. That just sucked.

I have gone through more potential donors than I have fingers on my right hand!! My brother tended to high Bp, my husband is pre-diabetic, my mother had issues w/her artery, my best friend had an infection, my husband's friend's wife went mental and freaked out about him doing it...finally, I think I will be getting a kidney from my aunt in Sept (delayed because HER boss is freaking out...).

What a journey.

When I am not being mom I work part-time doing marketing consulting for a client in the travel biz. I love this line of work and am looking forward to getting back to it close to full-time once the new kidney is in place and working.

I live near Brighton in england, with my fiance, and the new addition to our family, Harry the cat!
I haven't been on here for ages, i had kidney failure in Jan 2003, luckly i didn't need a transplant, but on the other hand i have been told by the doctors that it could happen one day. It's been really good to see everyone on here from way back, who gave me some support (thank-you). Now i'm better than i was back in jan 03 (thanks to the EPO). Would like to know how Mark from runcorn is getting on, if you read this, i hope your well.

Hi everybody. I am 43 years old, married with one 11 year old son and live in Brighton. I have had esrf since October 1983. The original cause was glomerulnephritis but of an indeterminate nature. I subsequently have had over the years: haemo, home haemo, (my fistula,done 1983, is still going) CAPD, APD, and I have had two successful transplants. I have been very fortunate and I am still smiling. I met my wife a few years before my illness but she has stuck with me through what must have been, at times, a ghastly experience. My wife and son are the loves of my life. What esle is there to say?

hullo everybody! My name is Virginia. I had reflux and double kidney as a child....so much damage to the right kidney that it barely functions now. Recently went to GP complaining of headaches and general fatigue. Was referred to a nephrologist who informed me this week that my left kidney is also scarred and I now have moderate renal failure. Had a final round of tests on thursday and next visit to neph, in 2 weeks, will be put on BP medication, vitamen D and start on a new "can't eat anything I like anymore" diet. Sorry this is so brief....am still in shock as I never knew this could happen.....was never told of the risks. Please, if anyone else here has had similar experiences with childhood reflux problem leading into adulthood disease, let me know as I could use as much info. as possible right now.

Hiya, my name is Doan and I am 30 years old. Diagnosed with kidney problems at 16. Kidneys failed at 20 and I was transplanted 6 months later. Kidney is functioning great and has enabled me to live a very normal life. Just had a baby last year and am contemplating another one.